The invitation, from the Chair of the review herself, Baroness Julia Cumberledge promised that the event would “…be pooling ideas to improve maternity services.”

And that “We are most anxious to hear from all those who have an interest in maternity services; the public, users, commissioners, professionals, and organisations who would like to contribute to our initial thinking. We believe there is much that is exceptional, good, kind, and sensitive to the needs of women and their families. But we also know that there are services which could improve and some which are deeply disappointing with issues that need to be addressed. At this early stage in our work, we do not have any answers but wish to hear from you and your colleagues about your experiences, your thoughts, views and opinions and some possible solutions.”

I was invited because of my work with #HugosLegacy and #MatExp. Hugo was of course present via his handprint on my necklace:

Overall, very well. The room was full of a range of interested parties including consultant obstetricians, midwives, members of the Royal Colleges of Midwives and Obstetricians; various NHS organisations, members of organisations that had been set up in response to personal tragedy (such as the MAMA Academy and the Campaign for Safer Births whom I was pleased to meet but did not have enough time to talk to).

Julia Cumberledge introduced the event by outlining the scope of the review, which is looking at the maternity experience from conception through to six weeks after birth. The timescale for the review raised a chuckle…

The comms plan for the review includes visiting centres across the country so as many voices as possible can be heard.

I loved the ethos for the event:

Be compassionate

Be a friend

Have fun

Assume it’s possible

And so we began with the first round table discussion, looking at issues and solutions.

A few points from the discussion (facilitated by Cathy Warwick) on our table include:

Women need individualised care within a system that genuinely supports the range and variety of experiences and needs women will have

Polarisation – high risk/low risk and between obstetricians and midwives – is very unhelpful

Connected with the above point, for better collaboration and teamwork between midwives and obstetricians – no ‘them’ and ‘us’. There is evidence to prove that training and working together as a team provides positive results.

Dignified care and safe care need not be mutually exclusive (contrary to what some of the polarised debate about where is ‘best’ to give birth may suggest)

Time for training – health professionals want to do the best they can for their patients, but are constrained by lack of time for training. Training on things like team working (such as cross over training between midwives and obstetricians so each can better understand each others’ perspectives) and effective communication would be invaluable.

Targets – such as C-section rates – are a barrier to women receiving care that meets their own individual needs.

Policies, procedures and guidelines are important of course, but there needs to be more encouragement for health professionals to use their own judgement to respond to women’s individual needs without fear of punitive action. This connects to issues relating to training and teamwork – enabling staff to do their jobs and giving them confidence in their practise – in short, empowering them to do their best.

Feedback from the other tables was insightful, including this point that being part of #HugosLegacy was music to my ears…

There needs to be a seamless care pathway to better meet the needs of mums whose babies are in the neonatal unit, as described in my post about what I want the review team to know.

Other points of insight included:

Need to make sure good practice can be shared across hospitals

Need to find ways to make sure care is women-centred – this goes back to tick boxes and things like C-section targets.

Need for better postnatal care.

Need for commissioning that is better connected between CCGs, local authorities, and NHS England.

Need to look at culture – acceptance that innovative vision is the way forward to make the changes that need to happen.

We need to manage risk, risk should not manage us. Antenatal education needs to empower women to make the right choice for them.

We need to eradicate concept of ‘high risk/low risk’.

Women and their families need to be more involved in the creation of pathways

Evaluation methods need to be more useful for service users – and the feedback meaningful.

A woman needs to be seen as a whole person, not a womb with legs – her emotional and psychological needs, for example, need to be considered too.

Three crucial concepts are: language, behaviour, and leadership.

(This is not an exhaustive list, and I may have missed things!)

There are a few issues that bear further exploration, for example: the remit of the review includes experiences up to six weeks after birth. This has the potential to miss two crucial issues: postnatal mental health, and the needs of mothers whose babies are in neonatal care, and/or who suffer a loss. The needs of these women extend well beyond the six week timeframe, and have long-lasting, serious consequences if those needs are not met.

I would be interested to see how the review incorporates these issues.

From a personal point of view, the event gave me a wonderful opportunity to catch up with and meet fantastic people whom I have got to know through social media. I won’t try to name everyone because I usually end up missing people out, but here are some photos…

I loved seeing Alison Baum again (she’s CEO of Best Beginnings, creator of the DVDs for which people so generously donated money for Hugo’s first birthday) and meeting Heidi, founder of the MAMA Academy, of which I am proud to be an ambassador.

The event nearly ended in tears for me, however. Chatting about #MatExp to two ladies at the end of the event led to me sharing my own experience. Asking how long Hugo lived for (35 days), they commented that it was ‘quite a long time’. I disagreed, saying that it was not nearly long enough. Objectively, I know that as Hugo was born at just 24 weeks the fact I got any time with him at all was miraculous, and I am very grateful for every precious moment I had.

But a tip for others when talking to a bereaved mother: DO NOT try to tell the mother that they are in any way ‘lucky’, and especially DO NOT persist in your point of view once the mother has expressed upset.

The women did apologise, saying it’s difficult to know what to say to bereaved parents. Another tip: empathy is key. ASK the parent how they feel, and if you really don’t know what to say, STOP TALKING.

Considering the breadth of experience of women – and men – attending these events will have, taking a moment to consider sensitivity, as well as sensible things to say (and not say!) is crucial.

Fortunately, it did not mar the very constructive and productive day. I hope we can see our thinking translated into real action and change for women and the staff who care for them.

Like this:

June was a month of action for the #MatExp campaign. It was well-named, being so busy I think I could see smoke!

The month got off to a flying start with the launch of the website, the Facebook page, people sharing their action selfies – and so much more!

Women have fed back that:

They want to be treated as an individual

They find terms like ‘low risk’ and ‘high risk’ unhelpfulfor a range of reasons, including that life is rarely black-and-white, and managing expectations.

They understand the evidence behind advice and practice, and do not want to be preached to. They want to be engaged in conversation as an equal, listened to with compassion and empathy, and helped to understand in a way that is useful to them where necessary.

Language is so very important– the words that are used are crucial, as is the intonation and the order you put words in a sentence (eg open questions – “Would you like…” “May I…” rather than “You must…” “I am going to do this to you…”).

Better efforts are required to meet the needs mums whose babies are being cared for in neonatal units – while the mum is in the postnatal ward, and after discharge to make sure she does not miss out on the usual postnatal checks, as this can often fall between the cracks.

Parents who have experienced the death of a baby need better access to support– too many parents are currently left to find their own support, or have to do without. This is unacceptable.

There is a lack of support after birth trauma. Mums have said they’ve been told to ‘get over it’, their experiences invalidated. This is also unacceptable.

More consideration needs to be given to birthing environments. For example, midwife-led centres seem so lovely, with attractive furnishings – and they seem especially lovely in comparison to many hospital labour wards. It can seem like giving birth in hospital (often the only option for ‘high risk’ women) is a punishment for things outside our control! Would it be possible to make hospital labour wards a bit homelier to reduce the disparity? It could help reduce some of the polarisation of opinion about where is the best or safest place to give birth (the best or safest place to give birth is the place that is appropriate for the woman and/or baby’s individual needs, whether than is in hospital, an MLU or at home).

#MatExp is growing from strength to strength. I haven’t had a proper ‘day off’ in ages (there is always something to tweet, something that makes me think “ooh that would be good for #HugosLegacy or #MatExp) – but I am so very proud of being involved in this change platform.

Gill (@WhoseShoes) has written in more detail about change platforms on her blog. I’ve borrowed this image from Gill’s post because I love the analogy. #MatExp really is like a bazaar – full of all sorts of people doing all sorts of things at once; slightly chaotic, full of ideas, activity, buzz, noise – ENERGY!

#MatExp definitely isn’t a cathedral – we don’t follow one particular leader, we don’t follow particular processes, we don’t follow a particular structure – and we don’t talk in a respectful hush.

Please do get involved! It is everyone’s business. Getting involved in #MatExp is like a no obligation quotation. We understand that life ebbs and flows, the time you have or are able to commit will fluctuate. There might not be anything that piques your interest now, but who knows what might happen next month, or in six months’ time (we certainly don’t – we’re making it up as we go along!).

We encourage people to find a way to engage that is relevant to you, where you are in life, the time you have on your hands.

For example, my lovely friend Jennie started a Charity Chat series on her blog, and information on recommended books for children dealing with grief. So much support is out there but it can be difficult to find. This will provide an invaluable resource for other parents and families.

For my part, I am going to continue encouraging people to #saytheirname; to talk about Hugo’s story, and the learning from that; to help reduce the taboo surrounding baby loss; to talk about #MatExp to anyone who will listen.

There are also some exciting ideas in the pipeline. My personal favourite is the possibility of colouring books – to help relieve stress and anxiety, as well as a way of conveying vital messages about pregnancy and related issues to women.

With passion and determination we can together make a difference to the experience of women and babies in maternity services across the country – and to the experience of staff who care for them.

Like this:

The National Maternity Review is going to be assessing current maternity services, and consider how services across the country should change to meet the needs of women and babies.

My son Hugo was born in February 2014 when I was just 24 weeks’ pregnant because I had the rare, life-threatening pregnancy complications HELLP syndrome and preeclampsia. The day before Hugo’s birth, I had been transferred to a specialist hospital two hours away from my home. Hugo died in my arms aged 35 days.

I have written about my experiences extensively in other posts on my blog. To very briefly summarise, there is nothing I can fault in the clinical care either Hugo or I received. However, there were many issues surrounding communication that could have prevented further stress in an already heartbreaking situation.

Hugo’s Legacy is about helping other women who suffer birth trauma, other families with a baby in neonatal care, and parents who lose a baby. Anyone who experiences any of these things deserves compassionate care, and a streamlined system that enables people to get the support they need, rather than battle against it.

So this is what I would like the National Maternity Review to know:

That every woman is individual.

That evidence is vital in the context of providing safe care. But to recognise that evidence cannot tell you everything. Each woman, each situation needs to be considered according to its own merits.

Postnatal care – Hospital

That any new mother separated from her newborn baby for clinical reasons, as Hugo and I were, should be reunited as soon as it is clinically possible.

That no new mother should be left in an intensive care bed, her baby in the neonatal unit fighting for his life, feeling that she is the least important patient on that ward.

There should never be a delay due to interdepartmental squabbling about beds, and to which department the responsibility of taking the mother to see her baby belongs. (This happened to me in intensive care).

That postnatal wards need to have a greater awareness of the needs of mothers whose babies are being cared for in a neonatal unit. It is difficult enough for us being on a ward with women who have their babies with them. Please don’t delay us visiting the neonatal unit to see our babies because of a lack of coordination between maternity and neonatal about timing of rounds. Please don’t force us to make our own meal arrangements because the food that is provided sits getting cold on a tray next to our postnatal bed, while we are spending precious time with our baby.

Me and Hugo

Postnatal care – Community

That better consideration needs to be given to the postnatal care needs of mothers whose baby is in neonatal care, especially when the woman has been transferred to a specialist hospital away from home. The pathways need to be clear, sensible, and appropriate staff aware of them. For example, at first I was told I would need to make the four-hour round trip to see my own GP – impossible. Then I was told I would need to register with a local GP – challenging. Eventually I was able to see a community midwife at the hospital.)

Support for Birth Trauma and Bereavement

That no bereaved parent should return home with empty arms and feel cast adrift from the hospital. To have to find their own support. To have to make telephone call after telephone call explaining an illness they do not yet quite understand and have to say the ‘D’ word again and again. To feel like such a failure as a woman and as a mother. To have to relive everything that happened again and again because services in the 21st century seem not to find the capability to communicate with one another.

That there is support for women who have experienced birth trauma, and for bereaved parents, but people need to know about it – professionals need to know about it so they can direct parents accordingly. Let’s use some of that 21st century communication capability to close those circles, make those connections.

That when a woman makes a complaint about her care, (or feeds back about her care in any way) they are listened to respectfully. That they are made to feel like a human being with emotions with a response that includes words like ‘sorry’ where appropriate. That they do not receive a response that feels like a report to the trust board, a box ticked. That they are reassured learning has been made so no other woman has to suffer the same upsets, the same heartbreak, the same trauma. The same nightmares.

No mother should ever be told by a panel of consultants their recommendation to ‘withdraw treatment’ for their child while that same panel of consultants stands, mouth agape as the mother lies crumpled on the floor, sobbing as though her heart has been ripped out of her chest. Which it has.

No mother should have to be told dismissively “all mothers feel guilty”, as if that is a salve on their pain.

No mother should have to read in a referral letter inaccuracies about the details of her son’s life and death, and for the GP who wrote it to phone her to apologise with the excuse that they did not read her notes because they were ‘too busy’.

No mother should be made to feel like she is abnormal because of what the trauma of her own life-threatening illness and grief over the death of her son has done to her mind. Instead, she should receive compassionate support to help her understand, and live with the trauma.

This is part of my story, a snapshot of my life and experiences since February 2014. There is nothing that can be done to undo what happened to me, or to Hugo. There is nothing that can be done to bring Hugo back.

But there are things that can be done to prevent other women suffering such unnecessary additional upset and torment.

That is why I would like the National Maternity Review to read, to listen, and to take account of my experiences.

Like this:

What a week! There are many lovely and exciting things to tell you about, dear readers.

But first, a moment of reflection. I’ve been distracted from my blog (I’ve really missed it!) and from my usual self-care techniques by some upsets with people about whom I care deeply. The upsets were on social media – as wonderful as social media is, misunderstandings are bound to happen from time to time. I’ve been at the receiving end a number of times and whenever the other person has apologised, I’ve acknowledged that while their comment hurt, I know it was unlikely to be intended and accepted their apology.

Anyway, this time my words were the cause of unintentional upset and for some reason my apology seemed to make it worse. To cut a long story short, I made myself physically ill with the stress of it all.

So, I am taking a step back and reassessing what is important in my life, and what I need to focus on. Firstly myself: I reminded myself of the very wise advice I wrote in this post. By trying to make other people happy, I wasn’t meeting my own needs – not by a long shot. I am who I am – candid, honest, enthusiastic and passionate about getting on and making change for other people’s benefit. I have a dry sense of humour, and with that I am kind, considerate, compassionate, and empathetic. I know I am a good person, I am happy with who I am and my motives for doing what I do.

My first step towards self-care was a lazy morning and a long cuddle with Fat Cat that we both thoroughly enjoyed.

The reason I mention this is the same as I mention anything on the blog – not to ‘pick on’ anyone or to make them feel bad, but to make a wider point about reflection and thinking differently. I am all about the bigger picture.

I am now doing my Taylor Swift dance, shaking it off and focusing on the positive. Ready? Let’s go!

Channelling the messages from my fab business cards (except for the ‘fat’ part, of course).

Work

My phased return to work continues to be much better than I anticipated, I am relieved to report. My manager and colleagues are wonderful; very kind and supportive, and understanding of my needs. Colleagues have welcomed me back, telling me I have been missed, and that they are glad to have me back. No one has pried, which has really helped me manage my feelings of anxiety and vulnerability.

Another huge positive is that I am helping lead a project about my great passion – patient experience. It’s really exciting, and it’s great to have something to feel excited about.

There is still a long road ahead of course, but so far so good.

Neonatal Parents’ Meeting

On Wednesday I went to London for a Neonatal Parent Advisory Group meeting. It was tough – there were tears from me – but such a constructive meeting. Sadly, the other parents who attended have also experienced loss; I appreciated being, for the first time, in a group of people who really ‘get it’. We are going to be working together to use the benefit of our experiences to help other families, which feels to me to be a privilege.

Maternity Strategic Clinical Network Meeting

That meeting was followed by attending this meeting to talk in front of around 100 people about Hugo’s Legacy, my involvement in #MatExp, and my experience of a Whose Shoes workshop as part of a presentation about the campaign and the pilot workshops.

Talking about Hugo’s Legacy and MatExp at a maternity Strategic Clinical Network conference.

Don’t tell anyone, but my week had been so busy I prepared my talk 30 minutes previously – I think I did alright. Lovely people came up to me afterwards to say Hugo’s story had really moved them, and I am also going to get involved with the work of the strategic clinical network to help shape better support for women who have similar experiences to mine.

I also really enjoyed the chance to have a face-to-face chat with #FabObs Florence Wilcock, after spending so much time communicating online. I have just realised we should have got a selfie!

Butterfly Awards

The wonderful Mel, who is behind the Butterfly Awards has invited me to give a speech inspiring other bereaved parents to share their stories, and to highlight why people need to put their temporary discomfort to one side and take the time to really listen to the stories. The invitation came about my latest #MatExp action, and I was honoured to be asked to and to accept.

I am also honoured to be shortlisted in the author/blogger category in the awards for the second year running. I know you will all be delighted to learn I’ll be asking you to vote for me again in a couple of months’ time!

My latest #MatExp action selfie

Other exciting things…

It’s naughty to tease I know…but I have been invited to some other things that I can’t tell you about yet, but I will as soon as I am able!

Self-Care

The kind people at Lumie have sent me a SAD and energy desk light to review – the idea is it helps prevent the slump that usually prompts me to hunt down some chocolate. I’ll be letting you know how I get on.

Most excitingly, I’ve been sent a colouring book to review! It’s a hard life, but someone has to put themselves out…and it’s a great reason to ensure sure I definitely make time for self-care.

I’ve also had my hair chopped. It had been getting shorter and shorter over the past year – the new ‘do is a braver version of the graduated bob I had last time. I love it – it is the perfect compromise between a bit of flattering face-framing length and hassle-free lack of length.

The new ‘do from the side.

Phew! Right, time for more self-care – and to make sure I have energy not only for the things I need to focus on, but BritMums Live too! I’m very excited to see all my friends.

Like this:

It’s been a rollercoaster few days: constructive discussion overshadowed by insensitivity and bias; and the discovery in a #MatExp discussion of misconceptions and a paradox that needs to be addressed.

Anyone who knows even the smallest amount about me knows that I am passionate about Hugo’s Legacy, which in a nutshell includes improving communication for neonatal parents, women who have suffered birth trauma, and improving information and support for bereaved parents.

Each of these three issues: neonatal care, birth trauma, and bereavement do not receive the focus they deserve. The people who have experienced these issues do not receive the support they need and deserve. That’s why I am so vocal about it.

Why am I vocal? Because I feel I – and women like me – are not being heard.

For example, say there’s a discussion about choice of where a woman gives birth. Some will say women always have a choice. Some will say it depends if you are ‘low risk’ or ‘high risk’ as though that is clear cut and black and white (it is far from it). Some, like me, will argue we had no choice. Or no choice that was meaningful, anyway. Too often, I feel that evidence is quoted at me about outcomes, NICE guidelines and other such things.

What I try to say is that I understand the evidence. But human beings do not obediently adhere to evidence. We are all individual and have our individual needs. Sometimes, our bodies do things that are beyond our control.

My body did things way beyond my control when I was pregnant with Hugo. These things nearly killed me. Understandably, I feel rather traumatised by the events. Understandably, I like to feel like I am being listened to, my experiences respected, my feelings valid when I talk about them.

In short, too often I feel drowned out by doctrine. That is an unfortunate word, but it’s a bit like when you see politicians being interviewed on the news: they often ignore what the reporter is asking them, quoting instead their own key messages.

Without wanting to sound flippant, it sometimes feels like those who quote the evidence at me are putting their fingers in their ears and singing ‘la la la’.

In return, I roll my eyes and mutter ‘blah blah blah’.

It creates animosity and mistrust between ‘sides’. There should not be any ‘sides’ – ultimately we all want the same thing, which is safe, individualised care for women, no matter where they give birth and no matter by which method the baby is born.

Earlier this week, this divide worsened being told in a Facebook discussion:

…but I do think it is a difficulty in having bereaved families leading discussions around maternity care – I for one sometimes don’t know when to take the personal approach and when to approach it as I would when discussing a question of evidence based care with another committee member without thinking of their personal background. There is conflict and I do not think there can NOT be conflict. And having had discussions around birth trauma with women who have NOT got to a place of peace, I do strongly feel that it is almost impossible for them to have a balanced discussion as it is too weighted an issue for them.

The person who wrote this has apologised. But I was so upset about it I sobbed. I sobbed most of the day, and cried myself to sleep that night.

I am sure the person feels bad about writing it, and I include the quote not to provoke further upset, but to underline the point that these views have to be addressed.

It upset me because there an implication that as a bereaved mother I am incapable of being impartial. That I will always be biased. That having experienced the loss of my child and birth trauma has somehow scrambled my brain and my common sense.

The fact is: nothing will bring back Hugo. Nothing will give me back my pregnancy. Nothing will give me back those months I lost last year in a fog of nightmares, terror, and flashbacks and feeling that I was bonkers simply because services had no idea what to do with me.

I have talked before about how lonely grief can feel. I have talked before about how much of a taboo bereavement is.

I have also mentioned the offence I took at how bereaved parents are actively excluded from the national Picker neonatal survey. I am sure the exclusion is with the best of intentions, thinking it is being sensitive. But I also wonder whether there is a concern that they will receive feedback that is too negative. Like the quote above implies, that our feedback will be biased, imbalanced.

It adds insult to injury.

How do we get our voices heard with such misperceptions of the bereaved, and those who have experienced trauma? It is incredibly patronising.

Talking about Hugo’s Legacy and MatExp at a maternity Strategic Clinical Network conference.

Not listening to people only compounds the upset, and generates more anger, potentially making existing issues more difficult to resolve – and creating new ones.

Reliving my experiences distresses me, as you can expect. But I am not a masochist.

The reason I pour out my heart on this blog, the reason I have got up at stupid o’clock to get on a train to a hospital I’ve never visited before to bare my soul to a room full of strangers is because I want to make a difference to other families’ experience. To make a positive from a tragedy.

Whenever I talk or write about my experiences, I am clear about how everything clinical was gold-standard. What let it down was communication – it underpins everything. So simple yet so easy to get wrong.

What on earth do views like this mean for wider patient engagement?

Do we exclude from engagement or discussions about any service people who are traumatised by their care, or diagnosis? Do we exclude people with long-term conditions? Their views on the issue will surely be weighted by their experiences. Like the bereaved and those who have experienced any kind of trauma, it is something they live with every single day.

Anyone who thinks they are truly impartial they are deluded. We are all shaped by our experiences; those experiences make us who we are. We cannot pick and choose. In the context of patient experience, staff listening to the patients will also be shaped by their experience. To suggest that discussions can only take place with those without ‘issues’ means that discussions can never take place.

We do not fit in to neat little boxes with neat little labels. Evidence-based care is vital, of course, but not everything can be quantified with neat little numbers and put in a pretty chart. Patient experience is about qualitative evidence – giving people a voice, and listening to what they have to say, even if it is unpleasant or uncomfortable.

I’ve been told I am a ‘conversation stopper’. I’ve also been told it’s not just about me. It’s a minefield of emotion.

It has to be put in perspective – your discomfort will last for a short while, but the heartbreak of a bereaved parent will last for a lifetime. That doesn’t mean the feelings of the non-bereaved don’t matter – of course not.

Anecdotally, I have heard and read of women who experienced birth trauma who feel that their story is not valid because they took their baby home. Taking home a baby is not the only thing that matters.

The way people’s experiences affect them depends on so many factors it is impossible to quantify. There is no better or worse, there is no scoring or ranking system.

But on the other hand, there are few people who can imagine something worse than the death of their own child.

This is the nature of the paradox.

There may be people who are unable to understand the paradox, and while that is frustrating I am also glad because they do not understand the pain of grief.

If there are people thinking the voice of the bereaved is loud, we need to take a step back and reflect on why we have to shout so loudly. Keep harping on about the same things.

We need to make sure all views are heard. That everyone feels their views are valid, their contributions valued. That there is no hierarchy.

That is why this is my second #MatExp action:

Because until we can be more comfortable with – or least accept – discomfort, there is likely to be more unnecessary hurt and upset. Surely no one wants that.